A Hip For Donavan

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Friday, June 22, 2012

Never stop advocating for your children and their critical needs...
don't be intimidated by insurance companies, their workers and their
hateful behaviors. Ever. Don't be intimidated by doctors, nurses,
administrators of any kind. Because if you don't aggressively advocate
for wellness ( physically & emotionally) for your child, nobody else will.
Do not be ashamed or discouraged, to be the Mother or Father you should
be.- John H. ♥ my loooove.

Before you go JUMPING into a conversation about books at a high school, between two other people EXCLUSIVELY -Meg Holt and friend, that does not involve you, and then SPEW CONFIDENTIAL TRICARE INFORMATION ABOUT MY SON AND HIS CASE IN A PUBLIC FORUM ON FACEBOOK DURING WORK HOURS, you might next time look inside yourself and realize how much wrong that is. These hateful, CONFIDENTIAL things were read by so many people, friends, family, church members, clients, DONAVAN and many of his friends That boy should have been protected by you and instead you blurted these OFFTOPIC matters a mile a minute..... We cannot believe it still. My son shouldn't have had to suffer this publicly, from his nurse care manager. You were my very dear and old friend, I'll never understand why you vented this way you chose. I am taking down the public words you said, because they hurt us everytime we see them over and over and over. Its over.

Tuesday, October 18, 2011

Via Wiki: Harvest is the process of gathering mature crops from the fields. Reaping is the cutting of grain or pulse for harvest, typically using a scythe, sickle, or reaper.[1] The harvest marks the end of the growing season, or the growing cycle for a particular crop, and this is the focus of seasonalcelebrations of many religions. On smaller farms with minimal mechanization, harvesting is the most labor-intensive activity of the growing season. On large, mechanized farms, harvesting utilizes the most expensive and sophisticated farm machinery, like the combine harvester. Harvesting in general usage includes an immediate post-harvest handling, all of the actions taken immediately after removing the crop—cooling, sorting, cleaning, packingI have added this, the Wiki definition of Harvest Season, because our son's situation and condition is very similar to harvest season. In the definition I am sure you can draw your own conclusions as to why I feel that harvesting is comparable to what Donavan is living, from the "cutting" to hopefully the CELEBRATIONS C :

8:55 am

Many people have been asking John and me what we need most for Donavan. So I am going to go ahead and publish this list, for anyone who wants to help or can pass it on to anyone who can. We are BURIED in residual physical therapy & travel costs, getting Donavan to Baltimore every 12 weeks, for his hip to be checked by his surgeon so that no new deformity begins. We greatly appreciate it!

* A Yearlong local YMCA pass (beginning Jan 1, 2012) for Donavan to strength train. He will be 15 in November and has been given the full go ahead to begin a program with guidance. The pool is Donavan's safe haven and where he spends most of his time recuperating. Swimming is 100% joint friendly, having no harsh impact on his hip, knees or feet. Donavan can *never *stop *exercising. Thank God,

the Y has the indoor pool. Also we are looking for anyone who attends our YMCA( Port Royal) regularly who may be a personal trainer that would be willing to donate a couple days a week to spend with Donavan. I know it will be fabulous for him to have a “gym buddy”. I have always been that person and now that my son is maturing he likes not to always be my buddy… I accept this.

* Financial help with custom shoe ware/lift. Hangar's Prosthetic's & Orthotics’ here in Beaufort, is the company that crafts these built in shoe lifts for Donavan. They add the lift into the actual sole of the shoe because he requires too much for just an insert. We are trying to manage the shoes currently, He went through his new school sneakers in 50 days, left heel now almost gone. The cost of the in sole lift is approx. $130.00. Donavan can never go again without proper lifts because of his L leg length discrepancy. It has caused him so much anguish :( His spine was compressing without a lift and the LLD has been inducing a perthes type scoliosis in his back. Looking at Donavan I can easily see with my mother's eye, his posture so off and his tendency to lean forward and to the right with his upper body trying to offset his left side. We will be addressing his leg length discrepancy this appointment in Baltimore (October). Donavan will again be forced into another decision, a growing child should not have to make whether or not he wants to sacrifice yet a 5th summer to a surgery he will have to be confined to Baltimore for (possibly 2 months) to undergo lengthening surgery. It is a decision John and I are leaving up to Donavan. He has had so many surgeries and so many lost months of so many past years to surgery that we feel he is at an age where he should be the one to decide.

He has said to us on so many occasions “I don't want to have any more surgery, even if I have to". When he was younger, we made the decision for him in his best interest. You can do that when they are younger.... not at this age. If you do and it’s not causing you problems, trust us it will! It’s such an ordeal, which is so exhausting every which way around that you must seriously weigh the pros and cons. I personally feel it would be beneficial for him to lengthen. To finally give his hips the advantage that every other teenager has, of being even. Just even. He has not had even hips, since he was 8 years old and the limping has become its own entity, carrying with it a huge complex that stares back at Donavan every time he looks in the mirror. It breaks our hearts and I fear the limp has been with him so long that it will take a miracle to change his outlook. That is exactly what I have asked God for. The walking posture he has created around the limp is very mechanical and has a huge ego of its own.

We leave for Baltimore soon and around that time every time, my stomach begins to be unsettled and my skin. becomes thin. Donavan too, but it begins the very moment we get to the airport, because Donavan has always been terrified of flying. In the 21 times we have flown pertaining to his care in Baltimore now, there has not been one time that I have not had to watch, as his face seems to elongate and turn the most morbid whitish grey that I never want to see again. With all he has to process and endure this is cruel for him to have, each time. L I’d drive, I really would but I am always leaving behind things of equal importance and must get back <3 Life.

Our questions this time for Dr.Standard fill an entire clipboard and I loathe the wait until our appointment… But, I am really trying to keep my faith. We have some amazing people in our life that won’t allow me to give up hope and encourage me constantly to keep my armor on, my head up and my fear to a minimum…Jonnie Sue,Allison L, Susan P, Janie C, Jeannie M, Vonette, Kelly L. Shelley L. Nancy G, Shelia, Michael, Lantz and many others. God knows Donavan and his pain. I have to rely on God, to run this show because my son is never honest with us about how much he hurts. That’s been a habit for years!! I have my ways of knowing and I can tell in a heartbeat, but he will try and take it to his grave. I believe he is this way for many many reasons…For one, he has been chastised MERCILESSLY by his peers, extended family members and many doctors for almost 8 long years. Since we have begun seeing doctor Standard he does not have to put up with unbearable pain anymore and that is a blessing!!! You would be mightily surprised at the doctors, nurses and physical therapists that have balked at Donavan and minimized his suffering to such a point that he dare’s not hardly speak of it any longer. He still denies when he is crumbling and sore. His ulcers are currently inactive, thank God but the reminder that they are there still just waiting to rear their ugly head, is apparent in his digestive difficulties and ruthless acid reflux. Donavan has consumed so much Naproxen, prior to being treated by Dr.Standard, that it ate a hole in his stomach and given him irritable bowel syndrome. NO ONE….. ever told me that this would happen.NO ONE…..ever told us that Naproxen impedes healthy bone growth!!!!!! LMy boy hurt, so I gave him what the doctors told me to give him. Now he can never again take another anti-inflammatory in his life and has a plethora of foods he cannot consume or else he pays for it dearly.

We will arrive for the appointment this month and he will stare his surgeon in the face and say “I’m fine”. Then I will open my journal and report the 31 late night baths at 3:30 am, the countless mornings I have rubbed his leg and foot at 4am so that he can bend and walk and get to the school bus on time.. all the meds he has had to bow to. All the times I have emptied out Tylenol’s from his pants pockets while laundering, because he never goes anywhere without them, needed or not. Yes, this surgery rescued him from immobility and the unrelenting bone on bone pain; but his general pain is still very much present, especially when behaving as an actual teenager when attempting to walk longer distances, playing ball, riding his bike or the occasional run. Thank God, it is not debilitating every day.

**We must attack this issue of his LLD (leg length discrepancy) and matters will be put to rest until his hip replacement. I will do my best to try and allow him the ‘personal space’ of trying to continue making others believe he is just fine, but while I must still hound and nag him to keep up his exercises or else his muscles and tendons become short and so tight again, giving his limp the upper hand. The yoga was a no go for him. A child that has suffered Perthes for as many years as Donavan has, cannot even fathom the idea of breathe and release. It is almost impossible. But he tried, and for that I am so very proud him!! Thank you Shelley C. Lowther for the love!!!!!

Donavan's birthday is November 22nd and he will be 15. He is kicking butt, in high school !!! He is a Latin fanatic and acing it!! Math has improved amazingly and his advanced writing class is actually enjoyable to him. I am so thankful our son does not struggle scholastically. As for physical education, he yearns to run with the other boys!! Donavan wants to be thrown the ball and chased, tripped and captured. Please pray for him to have all this next semester. I will do anything, go anywhere, and ask anything from anyone, for my son. Because he deserves it. He never asks for anything ( but for me to stop nagging him about his health) and I am working on that too! C:

Wednesday, October 5, 2011

10:39am, Wednesday, Wednesday you bring me a little more peace. We had as stated in today's blog title, a mere wee hiccup with Donavan's next post appt in Baltimore, Md. Due to a very irresponsible and reckless act of an administrative member in the chain of operations at the Naval Hospital here, Donavan's travel documents never made it to their destination for approval of our October 10 appointment with Dr, Standard. Of course I fond this out Monday, with only 6 days until John and Donavan were supposed to travel... John had taken off (2 full days) of work, school and clinical's for this appt. I was to begin my new job and all was well until Monday :( All a wash and a very hard & expensive pill to swallow. We are not even remotely financially comfortable, I know you know what I mean. But we thanked God for everything he continues to provide and we got back upon that saddle and rescheduled for 31 Oct 2011! This time I will be taking Dun and again leaving my husband and 1 yr old behind, also leaving behind the fantastic new job I lost. What can you do!?? Life. We start again and with more determination and power than before, not ever looking back!

Yesterday Dun's physical therapist told us that depending on what the report is from Dr.Standard when we go, that she wants Donavan to begin independent work outs. That is lone physical therapy, at 14... after a major hip reconstruction and several failed surgery's before it. I shuttered, as I listened to her explain that she felt at his age that she didn't feel he needed the supervised guidance anymore of actual therapy sessions. Gulp. I am not even going to begin to digest that until doc has his exam and xrays to refer to during Donavan's appt. With a pediatric disease like this, PT never ends.. .. when it does you are left with a large group of very important coddled muscles that peter out and then set off to completely discourage the child. I understand that at many levels Donavan should know how to work out independently, say during laps at the Y and such. But he is just too young and without the foresight and insight to be left to his own devices ( I feel) a mothers point of view is all. One of my biggest fears is that Donavan may be developing an impingement upon his newly growing L femoral head and that he will have to have surgery again in Baltimore for what the doc likes to call a "bumpectomy". Shorter surgery, but removal and again more reshaping.. more surgery. Ugh, he barely has much holding himself together now, let alone another extreme make-over. Pray please, that he has no deformity so far or in the future. <3

We are simply going to just breathe, pray and love until that appt of ours up in Baltimore on Halloween. C :

Thursday, September 29, 2011

8:43am. It's been about 2 months that I have not blogged regularly. This photo of Donavan can help to explain this. It was taken on the way home from physical therapy last week. Donavan has PT almost every single day after school. High School ! For the first time in 4 years our son began school on his own two feet, without use of a walker, wheelchair or crutches!! It has taken way more work than even we anticipated. In this photo he is seated next to his now, 1 yr old sister Lilah. He had confiscated her bow because she was chewing on it and it scared him she would choke, so he stuck it in his own hair. Being on his feet all day at school and then jumping off the school bus and running to PT is a mighty job. He grabbed up sissy's blanket and passed out on the short ride back home.... Donavan also has PT early Saturday mornings which is a real drag to him for it to be on the weekend, but he pops up speechlessly and knocks it out. We know that he does not need reminders as to how crucial it is he makes there every appt. In 8 days John is making the trip to Baltimore for Donavans 22 week post op review appointment. We must go every 12 weeks!! Its so hard on us every which way. We all grow so anxious about what the new xray and measuring will reveal about the new femoral head and newly established blood supply to the hip. This reconstruction cannot be under estimated. The surgery was enormous, the recovery has been slow and frustrating. Donavan's still dealing with a leg length discrepancy of 3 cm's that has his limp in full swing :( Sure, some of it is the atrophied pelvic muscles and the lameness of his quad and hamstring but there is a definite leg shortage that we must unfortunately address either at this appt or very soon after.It will require a leg lengthening surgery this summer ( another summer lost, sacrificed by Donavan to try and gain some normalcy to his life) We afforded one pair of sneakers with a built in lift on the left side, for him to begin high school. These shoes are already worn out and inflexible. That's a huge worry because they were very pricey but Donavan cannot go without suitable shoes or his spine begins to compress again from the strain of his constant limping..... So, our wish list begins again with new shoes with built in lift by Hangar Orthotics, here in Beaufort. He will need new ones about every 3 months I am afraid. The cost with reasonable sneakers and the lift is approx $170.00. Our physical therapy cost have mounted far above what Tricare allows and we just cannot swing the needed footwear. Donavan has also kept his weight down which has a huge impact on his well being. He has completely stopped consuming any soda pop whats so ever as it impedes bone growth and density!! This was so hard on him because it was just about his only teenage guilty pleasure. Someone extra special even packaged and shipped him some of his absolute favorite soda from Texas, Big Red and after that was gone he has not had anymore. Donavan is fiercely dedicated to his own recovery. With his new homeopathic supplements and managing his pain more conservatively with natural Arnica he has begun to actually see a glimpse of what a pain free life one day may be like. That I know is what drives him at the very young age of 14 ( 15 in November).

With John in full time clinicals at the nursing home and hospital and also working and attending classes we have a very tight schedule and very little funds. I am the runner for Donavan and we have to go every day, with sissy in tow :) It is truly a labor of love for me, however I have been wearing down quite a bit lately. We were swimming at the Y, 3X's a week as well and I have not been getting Donavan there as I was. 8 pm arrives and I don't even know myself anymore. I pray for renewal in spirit and a renewed commitment to our son and his full recovery. We are looking at another 12-24 months before we know what all this reconstruction has left him with. If we stop, we will move backwards.... rapidly and I won't let that happen! Donavans doing so well in high school. It has eased my worry that it would be too much for him, as there are stairs he must climb constantly through out the day. He refuses to use the elevator in front of his fellow freshman. I do not blame him. He was supposed to be issued an extra set of book at the very beginning of the year and was not until just yesterday :( He has been packing around a 31lb book bag against doctors orders. Praying that too will not impact his new hip at the appointment. So easy to warp or aggravate the hardware holding him together. I cling to high hopes that the acetabilum is contained and that nothing is growing the wrong way with any deformity. If you were following along with us before as I blogged every night, please join us again as I pick back up with further reporting of Donavans condition and progress. We have had some very very interesting folks come into our lives through this entire experience and it has been just so wonderful, I do not want it to stop. Have a great afternoon C :

Friday, May 6, 2011

Because we have not blogged in a couple days, I am just updating quickly. Donavan has multiple pressure sores and they are breaking him down..physically and emotionally. He can't move without pain :( Sleeps bad, wake time is bad. PT is murder even with pain meds on board. We feel powerless and will be aggressively treating him this weekend non stop, to try and give him some relief! Emotionally, Donavan is just a wreck ....and its just snuck up on him after he has tried and tried to stave it off for over a week. My hearts breaking for him. Hope and pray we get this under control this weekend!

Tuesday, May 3, 2011

11:07pm/ Taking a break for a more lighthearted shorter blog tonight. As I spent this evening with my family I was swamped with the overwhelming feeling of contentment and love, even in the face of adversity (as usual) usual daily/nightly difficulties.. Duns pain, exercises, chores.. disappointments..deadlines.....the same old same old.. I felt a glow tonight.

Money cannot buy the feeling Donavan got today by going down our new wheelchair ramp (ALONE), without me nagging him half to death to be more careful.

Money couldn't buy the freedom he felt today, rolling down the street alone (me behind him (: ) in front of our home, after being couped up the past 4 and a half months... out of school, at home in bed in pain 24/7...hospitalized for major surgery in Baltimore for a month and tethered to the bed now in brace and CPM... until further notice.

Money can't buy the look on your 7 month old sisters face, while she sits in your lap on the wheelchair, while Mom rolls you quickly over the bumps in the yard on a sunny day.

Money, .25 cents that is, does buy Donavan happiness of a stars and stripes cola, everyday we are at the hospital right before PT. The energy and boost it gives him to work with his pain meds, through out the strenuous and painful workout is priceless.

Money cannot buy the PEACE he feels wrapped in his favorite red plaid woolen blanket, on the table in clinic after PT, hooked up to NMES for pain control and relaxation after a hard session.

Money can't buy the feeling Donavan has opening get well cards, from strangers and some friends, wishing him well and great future happiness !

Money can't buy the generosity of people, to share their love and blessings with our son!!!!!! We will never be able to fully thank each and everyone of the beautiful people who have taken their time to write my boy ! The best I can promise is that I will be with Donavan every moment, every single second, step, breath...on his way back in recovery. No matter what. Even when he hates me for pushing him (as he does, because that's what we do in life...we are hardest on the ones we know won't abandon us when the tough gets going and grabs us up) Goodnight C:

Saturday, April 30, 2011

11:31pm/ I am sort of picking up where I left off last posting, except I am not going to relive all of it. So tonight I am going to briefly use the pics I have posted to say what we want said.. Last pt session was all new exercises and they were excruciating to Donavan. Lilah is always on my hip when we go and now I am rethinking that very seriously...she reacted when Donavan began to moan and then cry, see her eyes in this photo above? Those were of shock and fear, she was so uncomfortable she went straight to a half frozen bottle we had with us not yet thawed because I do not nurse during these times. She was comforted, so I was relieved. Donavan thought that the old stretches would be the only thing we would ever do.. his exercises will change often, according to what Dr.Standard wants and its going to get very hard from here on out. When you have had every major muscle group cut from the top of your knee to your lower abdominals...it takes a lot of work to come back..and we will !

Donavan was so tired and drained when he finished that I would have just liked to take him directly hoe, but we had to first refill at the new new pharmacy at the hospital, take a ticket..wait and then wait some more. Lilah served as humorous entertainment for brother as we waited. Donavan insisted on holding her although his weakness scared me. I know she inspires him with her endless smiling...! We are so thankful for our physical therapy and pharmacy, no matter the wait because they are wonderful, wonderful people ! Before we scooted out we ran to ortho to pick up a pair of crutches. Doc Standard says to have them on hand so that Donavan keeps in mind that he cannot rely on his walker too long.. About another 4 weeks and he will be crutches for very short distances and always wheelchair for longer ones for the next 6 months easily.

Then back at HOME.. .. lunch if I can force him to have some or a juice and he hits the bed for a couple hour nap..with Lorna. Lorna loves this boy like he was her own. She adores both the children...we couldn't be more blessed with a more loving, loyal and gentle dog in our lives ! Thank you Lord..!

Dr.Standard rang John and I yesterday and we spoke for a good long while. I was multi-tasking as usual and I did not expect his call whatsoever... I was delighted to hear his voice. "Meg, I am out of the OR today, how is Donavan?" ...... This our sons SURGEON..calling our home, to check upon him!!! Have you ever heard such a thing?? Patiently explaining to me what to explain to John when he came home, on the changes we should be expecting and the structure he wants implemented. Waiting patiently again for ALL my questions.... and I mean all of them. I had so many. Even with Allison, Docs PA..she is an angel and always gets back. But just as soon as she does, we have 10 more to ask. I know God gave this amazing man to us, to help restore my boy to a "child" the best humanly possible. In so many ways Donavan is like a 70 yr old man... Chronic pain for 7 and a half years of your life ages you and sky rockets you into early maturity :( Doctor Standard wants to give Donavan back to Donavan, zest for life..HIS LIFE!John and I are so thankful for this doctor and his amazing team! There is no failing with them, no QUITTING, no excuses..no laziness, no lackluster anything. Just Gods intended BEST ! I love Doctor Standard and his wife for sharing him with all our children and us, so often ! I pray every blessing upon him and his family, and all the staff that surrounds doctor Standard in his never ending pursuit to change the lives of these children assaulted so viciously by Perthes disease. Goodnight C:

About Me

I am an unapologetic ferociously protective, blessed mother & wife to the absolute most awesome family in all of God's creation.Please look for our up and coming book about our son Donavan's ongoing battle with Perthes disease ( LCPD). Thank you C:
http://ahipfordonavan.com
All works by Meg Holt are copyrighted and clearly posted.